This blog shares the daily life of a family living with two Type 1 diabetics.

Welcome

I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Thursday, July 22, 2010

I worried when Jessica was diagnosed that she would lose her childhood. Of course, as fate would have it, she was diagnosed right before Halloween. There is no good time to be diagnosed, but we had already picked out costumes and Jessica had begun dreaming of bags and bags of candy. We coped as we had to. We read a book to Jessica about celebrating Halloween with diabetes. My mommy guilt fostered creativity, and the "Halloween Fairy" paid a visit, leaving a path of glitter across the kids' bedroom floor. Jessica still had fun trick or treating with her friends, and then both her and her sister saved 5 pieces of candy and put the rest in a bag that they decorated for the Halloween Fairy. I woke that morning to the gleeful sounds of their laughter and squeals as they saw not only the glitter path, but the presents that had been left in return for the candy. One big, huge milestone was successfully crossed.

Of course, the hurdles continued and many more lie ahead.

It has been an interesting year. I never realized how much every holiday revolves around food until Jess developed Type 1. Suddenly, the holidays were not just to be looked forward to. They were each a challenge to figure out how to maintain their magic, all while keeping Jessica on a strict meal plan. Candy and donuts poured into Jess's classroom and car rides home were full of tears of what no longer was to be. But, we survived and we learned from each experience.

Suddenly, the school year was ending and the big question loomed...what would we do about the summer? Jess and her sister have always gone to summer camp. They love it. They love meeting new friends, and all the fun summer camp brings. I don't think it ever even occurred to Jessica that she wouldn't go to camp this summer. My husband and I explored resources and struggled with what to do. I remember being so frustrated as I could not find anyone else who had sent their Type 1 diabetic child to summer camp...normal day camp...not the one week diabetes sleepover camps that I know are amazing, but leave working parents with the question of what to do with the child the rest of the summer. We called the local camps. None of them have nurses, and one downright refused to take her.

We took the leap and with great fear enrolled her in a local day camp. The beginning was incredibly rough...a future post will provide details and recommendations. I arrived at work crying and shaking with fear that I would be getting a call any moment that she was on her way to the hospital in an ambulance. The camp counselors are not allowed to use glucagon. If she gets that low then no one could help her and the ambulance would be called. She was only 7 and the camp counselors and director had no experience or knowledge about diabetes. We and a good friend have taken turns going at lunch to give her an insulin shot and check on her. It has been a terrifying summer.

But, with now only two weeks left of camp, I can take a step back and look at the victories and the growth that have developed. I have always felt that without fear and uncertainty there can be no growth. This summer has demonstrated that beyond leaps and bounds.

Jess has done it, She has learned to manage her diabetes almost entirely by herself. She came home one day so excited to tell us that there had been ice pops at camp. She had asked to see the box, looked at the serving size and carbs, and made the decision that since they were only 3 grams of carbs she could have one. We were blown away. I can't even teach half of my adult patients that concept. She has managed her lows. She has managed the increased activity of camp by adjusting what she eats. While we are not out of the woods yet, and I am still nervously counting down the last two weeks of camp, Jessica's accomplishments have surpassed our wildest dreams.

And tonight, we nervously checked her HgbA1c, and were surprised and elated to see the number 7.3 pop up on the screen. We had decided that it was more important to us that Jessica have a normal childhood this summer then have good blood sugar control. Once again, she surprised us and was able to do both.

Do not let diabetes stop your child. They can do anything at all if you just help them. Children are capable of so much if we give them the freedom and wings to obtain it. Support them, problem solve with them, and believe in them. But, don't let diabetes steal their childhood. It doesn't have to.

Tuesday, July 20, 2010

Welcome to the Type 1 Diabetes Club. It is a club you desparately want out of, never wanted to belong to, and yet here you are. And, I hope this helps you get through this first month. If you are like most of us who have been initiated into this club, your world has been shattered, your mind is spinning, and you are not sure things will ever be right again. I, and many others, have made it through and I can tell you that things will be ok, but I hope this helps you make it through the first 30 days when it might be hard for you to realize that. My daughter was 7 when she was diagnosed, so a lot of my advice relates to young children being diagnosed. Some of it is applicable to families dealing with a diagnosis at any age.

So, lets get started. This is what I wish I had known.

I still remember the despair I felt sitting in the Emergency Room the night of my daughter's diagnosis. You may be feeling similar emotions, or emotions that are just as bleak but different. Anything you feel right now is normal. In general people facing the diagnosis of diabetes in their child go through denial, grief, anger, and depression. Based on my experience the phases werenʼt as orderly as the books lead you to believe. I felt as though I were in this bleak existance floating between denial and such despair.

Here are my practical recommendations for starting to heal in these first 30 days:

1. Be kind to yourself.

2. Try to accept that this is what life has handed you, and you will define yourself by how you handle this. And, you can handle it well.

3. Know that your child will give you strength and become your biggest hero.

Iʼd like to share with you a poem my daughter wrote 2 days after diagnosis:

Diabetes makes me mad and happy But mostly sad How can I get through this way? I just have to get through this day. I hope I see the stars. Then I want some chocolate bars. Because sometimes the stars can make a shape like a chocolate bar. Diabetes really hurts. But sometimes I may burp. I like this rhyming song. And I like to rhyme along.

However your child chooses to express themself, you will be amazed by how they handle this. I have been a Family Physician for many years, and what has always overwhelmingly stricken me is that children always handle chronic illnesses they get better than their parents. So, I feel confident telling you that you will get strength from your child. As you watch them learn to process and handle this you will gradually feel better.

4. Know that the beginning is the worst. The first blood sugar checks, the first planned meals, the first shots...they are horrible. Just know they will be.

5. Do only the bare minimum in every other aspect of your life for the first few weeks. Recruit help. Even if you have never asked for help before this is the time to do it. Tell people what you need. Donʼt make them guess or they will guess wrong.

6. Try to give yourself ten minutes a day where you take a vacation from diabetes. This will be hard at first as it consumes you. But it is important. For me it was reading a romance novel while I blew dry my hair. Donʼt be surprised if you have to keep re-reading the lines, but at least go through the exercise.

7. Start seeking out a support group. Go to Juvenation, this is a Facebook equivalent for Type 1 diabetics and their families. The JDRF has a link to pen pals you can get for your child. See if your doctorʼs office knows of a support group. Reach out---you will feel so much better talking to others that have been here and made it out to the other side.

8. Know that this despair and these feelings wonʼt go on forever. There will come a day when you wake up and things arenʼt so black. You will realize that while things are not normal, they are a new normal and they are ok. If you donʼt start noticing that things are better after the first 30 days talk to your doctor. You may be depressed and it will help you, your child, and your whole family if you get help for this. It is common and it is treatable. You are going to need to feel your best to take care of your child.

9. Get a food scale and a good one. We have one that comes with a book with every imaginable food. You enter the code for the food, weigh the food, and push carbs and it gives you the number of carbs in the food.

10. Streamline the carb counting. Here's what I mean...I learned very quickly that 84 grams of grapes=15 grams of carbs. Pick your child's favorite food and learn how many carbs are in it. Label your boxes if that helps. One of the most helpful things anyone did for me was when my mom went through our pantry and wrote on our food boxes. For example, she put 5 crackers=15 grams of carbs. She did this for almost everything in my pantry. We don't do it now as we tend to buy the same things and have learned how many crackers or how much cereal equals one carb choice, but in the beginning it made things so much easier. I found carb counting initially very overwhelming, so anything you can do to make it easier helps.

11. Know that if your child is like mine they will be STARVING in the beginning. Jessica was constantly begging for food. When we went back for our follow-up they said "Oh yeah, we forgot to mention that kids are starving when they are first put on insulin." We went through bags and bags of string cheese that first month---come up with some carb free foods that you can give your child when they are starving and have already eaten all their alloted carbs.

12. Know that your child's crying or screaming or begging when you are about to give them a shot is just their way of coping. A good friend told me "aren't you glad she has found a way to cope?" It may be unpleasant, but that is really what your child is doing. They are just coping with the shots they must now endure. And soon she or he will find a more pleasant way to cope.

13. Don't forget your non-diabetic kids. This is scary for them and they may be feeling guilty. A lot of siblings wonder why their sister or brother got diabetes, instead of them. If your child is young, make sure you tell them it is not their fault and it was nothing they did. Young children often feel responsible for things they shouldn't. Try to spend some time touching base with them and seeing how they are doing too.

14. Make sure you arm your child with knowledge. My daughter's first day back she was greeted about questions as to why she got diabetes...did she eat too much candy? There is an excellent book called "Taking Diabetes to School," that we went with our daughter to read to her class her first day back. Depending on how old your child is this is something you should consider.

15. Try to keep doing all the things your family did before. They may have to be modified, but don't let diabetes take what you and your child enjoy away from you. My husband has lived with Type 1 diabetes for over 20 years---he has traveled to desolate parts of the world, gone through medical school and residency and has also become a Family Physician, and never let diabetes stop him. Don't tell your child they can't do something because of diabetes...ask them how they will do it. We love to travel and so we planned a short weekend away soon after my daughter was diagnosed. Proving to ourselves we could successfully still travel all while managing her diabetes was a huge sense of relief. Look at what your family likes to do and make an effort to keep doing it. Diabetes can be intimidating, but don't let it win!

Wednesday, July 14, 2010

As I sat in the ER that night I jotted down my thoughts. Writing has always helped me cope and I just found myself needing an outlet for all of the racing thoughts I had as I sat and tried to process the huge bombshell that had just been dropped.

DespairGuiltSuch SadnessFearI'm terrified for her future. How will I do? Will I be what she needs? If I fail will she be non-compliant? How will I do this?

My sweet, sweet perfect baby girl.

Fast-forward nine months, and I want anyone with a newly diagnosed child to know that we are fine. Life is not without daily struggles, but Jessica continues to amaze us. She is attending a regular day camp (we and a good friend take turns going at lunch to give her insulin), she is learning how to count carbs, and she has adjusted better than I ever would have imagined that night. Although your world is shattered, have faith that one day, sooner than you think, the pieces will fit back together. They won't be in the same order they were, but your world will once again be filled with happiness and hope.

We were traveling down life's road with its many twist and turns. As I spent time packing for our big, much anticipated camping trip I didn't give any thought to the marshmallows, chocolate, and graham crackers for the smores. I threw in hot dog buns, Capri Suns, and ketchup without even glancing at the nutrition label. Little did I know that within a few short hours my world would be spinning with information about carbohydrates.

Looking back could I have had any idea? I have asked myself that over and over, and I didn't see a single sign until that day. Had she lost weight? Maybe a bit...but she was playing soccer. Had she been eating more...well, yes, but maybe she was going through a growth spurt. That day on the way to the campground the writing on the wall was crystal clear.

The night Jess was diagnosed we were on our way to go camping for a long weekend. We had left 45 minutes prior and were headed down the highway. Everything had been great. She was totally herself, had played an entire soccer game 3 days before as we had no subs and was our leading scorer, had gone to a sleepover with one of my friends who is a doc and noticed nothing. It was just regular old normal life and we were so excited for the trip. The girls had helped me buy their first real sleeping bags, the tent was packed...it was a good time.

Jess asked for a drink and we thought nothing of it. Ten minutes later she asked for another. We had just picked them up from school so I figured she hadn't drunk much that day. My husband stopped to pump gas and she asked me for another drink. I told her she had had enough. She begged me for an ice cube..."my mouth is burning." I started to get an uncomfortable sense of dread. Forty-five minutes after we had left home we stopped at a McDonalds as Courtney (our other daughter) had to pee. Jess tried to drink out of the spigot of the bathroom faucet---something her germ-phobic mother has made sure she has never done. I came out of the bathroom, my heart racing, and told my husband we had better check. I thought I was over-reacting but didn't want to get to a campground late at night with unknown cell phone coverage. She begged us not to check. Jessica is my child that screams when you brush her hair. I always joke that she will have fibromyalgia...she just has such a low pain threshold. We held her down screaming and checked. The meter read "critical high" and my entire life shattered. We checked again....surely it must be a mistake...she was just fine...we are going camping...this isn't happening. "Critical High" it read again. Courtney reads our faces and screams "Jessica has diabetes?" Jessica panics "I have diabetes?" I can't think straight. Everything is happening so fast and we are outside at a McDonalds. I think surely the meter must be broken and I check my sugar---96. I am now completely panicked.

In the ER we tell the receptionist our daughter has new onset Type 1 diabetes. She looks at us like we are crazy...who referred you? We did...she looks like we have lost our mind. We get taken back and begin our ER experience. I ask for the child life specialist which thankfully I knew to ask for. We saw two very bad residents...my favorite phrase by the pediatric resident....after she happily skips in and sings "how we doing tonight?" I answer "could be better," to which she replies in front of Jessica..."Awww...does mom need a box of tissues?" Well, let's see...you just told me my child's blood sugar is 684, and I just had to hold her down while she begged and screamed for me not to let them put an IV in her. And, we have just had to give her her first two shots of probably a billion in her lifetime. I'm a doctor so I've admitted the horribly uncontrolled diabetics. I've rounded on them after they've had their legs amputated. I've seen the 20 year old--who decided to just stop taking her insulin while she used cocaine instead--code in front of me and die. I've delivered the news to her absolutely devastated parents that we did all we could, but we couldn't save her. I now see Jessica's face when I think of that night. Yes, Miss Pediatric Resident....I could probably use a box of tissues! Of course, I keep this to myself and tell her I am fine. Luckily, Jess was not in DKA and we were discharged at 1 am to follow up the next morning with the pediatric endocrinologists at 8 am for 8 hours of education.

The first week is black. I have never felt that way before. I've had some minor gray periods in life, but not black. Just when I thought I couldn't take it anymore...I'd have to start an SSRI or something, it lifts. And, Jessica is the reason. She stops screaming and being held down for shots. She comes up with a ridiculous routine instead that involves counting to 30, singing a song, tapping specific fingers before shots...but she stops screaming. She writes a song. She reads a book about diabetes to her class. She does what every child I have ever known does. She adapts to what is happening better than any adult. I begin to realize that while life will never be normal again, it will be a new normal.